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Long trips can be stressful, especially when you’re living with a rare disease like amyloidosis. Symptoms vary from person to person, and the disease can affect different parts of the body depending on the type of amyloidosis. For example, people with hereditary ATTR (hATTR) amyloidosis may be more likely to experience heart issues like cardiomyopathy (heart muscle disease) or neuropathy (nerve damage). Traveling away from home can also make it harder to find medical care.
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“I want to travel with my wife, who has amyloidosis, and I want to know about traveling on flights that are nine hours long,” said one member of MyAmyloidosisTeam.
The good news is, travel is possible for many people living with amyloidosis. With the right planning, you can set yourself up for a smoother trip. Here are six ways to prepare — advice from others who’ve traveled with the condition.
Your healthcare team is your best resource when preparing for a trip. Be sure to check in with any specialists you see, such as a cardiologist (heart specialist). They can let you know if it’s safe for you to travel and give you copies of your prescriptions and any important medical documents.
Your doctors may also recommend vaccines based on where you’re going. If you need therapies like dialysis, your doctors can help you schedule care at your destination.
Travel insurance can help cover costs if you need to delay or cancel your trip. But for people living with amyloidosis, finding the right plan can be more complicated. It may be harder to qualify or may cost more, something many people with preexisting conditions experience.
Travel insurance policies can also have special rules. For example, some require a period of stability before you travel. One member shared, “Travel health insurance asks for six months of stability after a heart transplant. That means six months without changes in the medication. I hope to meet this requirement around April, one year after the transplant. We’ve already reserved a cruise in Scotland for next May. I hope my condition will remain stable.”
Start researching travel insurance early, even before booking your trip, if possible. You may want to speak with an insurance broker who understands plans for people with health conditions. When applying, share your medical history as requested to help avoid denied claims. Also, check whether your policy includes medical evacuation coverage, which can be especially important when managing a complex condition like amyloidosis.
People living with hATTR amyloidosis or other types may experience peripheral neuropathy. This nerve damage can lead to tingling, numbness, pain in the hands and feet, or balance problems, which can make it harder to get around.
One MyAmyloidosisTeam member said, “In large airports, I need a wheelchair to get to the gate if it’s far away.”
Another member shared, “Travel can be a challenge. That’s why we arrange for a golf cart or wheelchair ride to the gate before we leave home.”
Think about your destination, too. Will there be a lot of walking? If you’re planning sightseeing tours or visiting a foreign city with cobblestone streets, dirt paths, or stairs, you might get tired more quickly. Look into mobility and accessibility options, like scooter or wheelchair rentals, when planning your trip.
Traveling with medications can take extra planning. If you’re flying, make sure everything is clearly labeled and properly packed. Some medicines may need to be kept refrigerated. Ask your doctor or pharmacist how to store your medications during travel, and check with your airline about specific requirements. If you use injectable medications, look up the rules for carrying them on board, both within the United States and internationally.
If you need to refill prescriptions during your trip, it’s essential to talk to your insurance company before you leave. They can tell you if there might be any issues. Bring a detailed list of all your medications, including:
It’s also helpful to carry a letter from your doctor confirming your prescriptions.
Research where you could fill your medications at your destination, and keep the documents you may need to get them.
Many members of MyAmyloidosisTeam have had good experiences when traveling within the United States: “We travel around the country to see family and have never had any problems with pharmacies accepting the insurance,” one member shared.
Even with careful planning, unexpected health issues can interrupt your trip. That’s why it’s important to have an emergency plan in place before you travel.
Carry a letter from your doctor that explains your medical history so you can share this with any new doctors you may have to see. This letter should include:
Before you leave, talk to your healthcare team about potential treatment options for unexpected symptoms like shortness of breath or hypertension (high blood pressure). Ask what counts as an emergency and when it’s OK to use over-the-counter remedies.
Having a list of nearby hospitals and emergency contacts will give you peace of mind on your trip. Look up phone numbers, hours, and the types of specialists available at these places. If possible, find hospitals and specialists at your destination who know about amyloidosis.
Wearing a medical alert bracelet or necklace is also a good idea. It can help others understand your condition quickly in case of an emergency.
Traveling can be tiring, especially if there’s a time change or a big difference in climate.
One member of MyAmyloidosisTeam shared, “I flew to Thailand from Chicago, stopping in Seattle. One flight was 15 hours long, and with the connection, I was in the air for close to 24 hours.” They added, “I didn’t have any issues with the flights, but adjusting to the cold back in the U.S. after being in a hot climate was another story.”
Be sure to schedule some downtime after your trip to rest and adjust. If you experience any signs of sickness, like gastrointestinal problems or a fever, contact your doctor.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
Have you traveled while managing hATTR or another type of amyloidosis? Let others know how it went in the comments below.
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I travel from Thailand to Japan (5 hrs), India (3) and U.S. (24+) each year. This article gives great, practical advice, I would add, just don’t put off getting on a plane, thinking you can’t. It… read more
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